Nebulised Colosistin /Colomycin users.... need Advice please... ...

[Phill1]

Hi ... Have bronchiectasis with pseudomonas ... Been actively treating it with ACBT / AD.. And azithromycin for 1 year now.

Had 2 flare ups( not sure whether first one of them was for sure) First flare up had to stop Ciprofloxscin after 10 days because of awful heartburn. Recent flare up managed to tolerate the Cipro by taking PPI at same time

Consultant recently suggested I start nebulized colosistin

In part because I am a carer for husband with advanced Parkinsons, and need to stay well / out of Hospital. Also apparently have 2 types of pseudomonas ( didn't know there was different types🙄) & also because he thought I may not tolerate this last round of Cipro ( which I did)

I'm not sure of the benefits?...I am & have been active & & well . Have appt next week to try it out 😬

Would really like to hear from regular users

Can I just take it for a few months?

Do you feel better for using it?

Do you bring up less mucus/ still have to do rigorous clearance?

Is it a pain when going away/ traveling? ( Can you miss the odd one??)

Sorry for all questions.. Just not sure I need to start this just yet .......,

[Mooka]

Hi Phill1 I have used colomycin for over 4 years. Before I started on it I had two weeks of iv antibiotics to kill the pseudomonas. My first time with the nebuliser was done as an outpatient where they checked how well I tolerated it. I did start getting a tight chest when using it so my immunologist added in salbutamol. I’ve only had one infection since starting this. My Bronchiectasis is mild and I really don’t produce much mucus. The nebuliser has to be a powerful one as the colomycin is thick so small nebulisers can’t cope with it. So yes it is a pain when going away. You either have to lug your big nebuliser with you or have a small one and accept it will take forever and won’t do such a good job. I went away this year and left my chamber at home so went four days without it with no ill effects but mine is well under control now. I can’t answer your question on whether it will be long term for you. I am immunocompromised so can’t fight the infections myself. Some people cannot tolerate colomycin so if you do have problems seek help with it. There are other antibiotics you can use. Good luck and let us know how you get on.

[Phill1 in reply to Mooka]

thanks for response Mooka... I will let you know how I get on... (pleased that may be able to wangle the odd day off once established.)

I'm not immunocompromised so will ask the question re short term

I do produce 15-20 mls of mucus.. Takes up to an hour once a day.. Which is a pain... But hey ho...Was hoping that may reduce if on colomycin

thought there would be quite a few people on this site that would be taking it.. Maybe not as common as I thought🙃

[Phill1 in reply to Mooka]

PS Do you take carbocysteine? I didn't get on with it.. Find NAC supplements work better for me

[Mooka]

I think you will get more response in the lung conditions forum. I think there’s a few on there that have been on it. Yes I take carbocistene, I’ve never had a problem with it, in the past I’ve also taken co-tromoxazol and Azithromycin as a prophylactic antibiotic. BTW I use the time on the nebuliser to look at HU 🤣

[Phill1 in reply to Mooka]

thanks Mooka... Have just reposted this on the Lung CF 👍